Ethical Considerations for Engaging Youth Living with HIV in Research: Perspectives from Youth, Their Caregivers and Subject Matter Experts in Kenya.

IF 1.7 4区 哲学 Q2 ETHICS Journal of Empirical Research on Human Research Ethics Pub Date : 2023-10-01 Epub Date: 2023-08-13 DOI:10.1177/15562646231193949
Ashley Chory, Winstone Nyandiko, Emma Gillette, Michael Scanlon, Josephine Aluoch, Hillary Koros, Dennis Munyoro, Celestine Ashimosi, Whitney Beigon, Janet Lidweye, Jack Nyagaya, Allison DeLong, Rami Kantor, Rachel Vreeman, Violet Naanyu
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Abstract

Introduction: Engaging youth living with HIV (YLWH) in research is critical to improving HIV-related outcomes, but their involvement raises unaddressed bioethical questions. Methods: This study used qualitative inquiry with Kenyan YLWH, caregivers, and subject matter experts (SMEs) to evaluate ethical considerations and strategies for research involving YLWH. Results: Interviews were conducted with 99 participants: 40 YLWH (median age 17.5, 50% female), 20 caregivers (70% female), and 39 SMEs (44% female). All participant groups discussed the need for HIV disclosure status assessment, confidentiality, and engagement of caregivers. Youth participants discussed the importance of clear protocol explanations and developing good rapport. All participant groups perceived youth under 18 to be harder to recruit due to a number of identified barriers. Clinic settings were the most acceptable place for recruitment. Conclusion: Participants provided perspectives on engaging YLWH in research that can be incorporated into protocols and regulatory guidelines.

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参与青年艾滋病毒感染者研究的伦理考虑:肯尼亚青年、他们的照顾者和主题专家的观点。
引言:让感染艾滋病毒的青年参与研究对于改善与艾滋病毒相关的结果至关重要,但他们的参与提出了尚未解决的生物伦理问题。方法:本研究对肯尼亚YLWH、护理人员和主题专家(SME)进行了定性调查,以评估涉及YLWH的研究的伦理考虑和策略。结果:对99名参与者进行了访谈:40名YLWH(中位年龄17.5岁,50%为女性)、20名护理人员(70%为女性)和39名中小企业(44%为女性)。所有参与者小组都讨论了艾滋病毒披露状况评估、保密和护理人员参与的必要性。青年与会者讨论了明确的协议解释和建立良好关系的重要性。所有参与者群体都认为,由于一些已确定的障碍,18岁以下的年轻人更难招募。诊所环境是招聘最容易接受的地方。结论:参与者提供了让YLWH参与可纳入方案和监管指南的研究的观点。
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来源期刊
CiteScore
3.50
自引率
7.70%
发文量
30
审稿时长
>12 weeks
期刊介绍: The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
期刊最新文献
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